Last Thursday, Adam and I went to Johns Hopkins for our third second opinion (or our fourth opinion?).
When I was first diagnosed, we received recommendations from a lot of family and friends about where to go for treatment (Johns Hopkins, Georgetown, MD Anderson, Mass General, etc.). We decided to start by getting a second opinion at Georgetown University since it was close and I could easily get regular treatment there. Georgetown also has a well know gastric cancer department, so we felt like we were going to a good place. At first, I didn't like the doctor we met with. He essentially agreed with the diagnosis from Virginia Cancer Specialists, agreed with their recommendation to start treatment with the EOX protocol, and agreed that I would live with cancer for the rest of my life. He thought I was too sick to wait to start a clinical trial (it would take several weeks to start treatment in a trial). He said he knows the physicians at Virginia Cancer Specialists, he works with them often, and thought I should continue getting my treatment there. He said he was happy to meet with us again in a few months if the treatment didn't work or if we needed any recommendations, and then he sent us on our way.
I guess I was under whelmed because I had expected that a cancer center with a larger GI focus would have more answers. I wanted him to tell me to come there for treatment, that they can get results that community cancer centers can't, that because I am young, he wants to be aggressive and fight this with us. It was disappointing that didn't happen, but at that time, I was so sick that it really didn't bother me much. I was ready to go home and start treatment right around the corner from my house. So that's what we did.
After making good progress on EOX, I started to be unable to get in full treatment cycles. EOX includes two weeks of oral chemo, but my blood counts were so low after a week that I had to stop treatment to get Neupogen (a white blood cell stimulating factor). After six rounds of EOX, I was doing pretty well. Earlier PET scans had shown a dramatic decrease in tumor activity, my tumor markers were down, an endoscopy showed that the tumors in my stomach were gone, but there were still tumors in my liver to contend with. So we decided to take a short break in treatment to get some more opinions.
Adam scheduled appointments for us to go to Memorial Sloan Kettering in New York and back to Georgetown. Sloan Kettering is the second ranked cancer hospital in the nation after MD Anderson in Houston, TX. My local physician fully supported us going to Sloan for another opinion; he had done his residency there and told us they have a huge GI cancer center. He thought they would be excited to see someone so young.
When we got to Sloan, we were shocked at how large the GI cancer center was. The waiting room was huge and it was packed with patients. I noted several other younger female patients in the waiting room. When we met with the physician, he was nice, but essentially told us that we were already on the right track. He recommended a change in treatment - he thought we should stop the epirubicin (the E part of EOX) and continue with oxaliplatin and 5FU (5FU and Xeloda are in the same family, just different routes of administration). He told me it was unlikely that the tumors in my liver would ever go away and that I was doing fine as long as they were shrinking or getting smaller.
I was really upset after our meeting at Sloan. Is it too much to ask for to find a doctor who wants to be aggressive? One who thinks that progression-free survival isn’t good enough? I’m 32, not 84! A few more months or years is not the plan I am going for. It was beyond upsetting. Here we were, at the second best cancer hospital in the country, meeting with a physician who specializes in gastric cancers, and we were getting the same news. Granted, his recommendation to stop epirubicin and change from Xeloda to 5FU were both good recommendations, I was just expecting a lot more.
By the time we went to Georgetown for the second time, I had more realistic expectations. The physician agreed with the recommendation from Sloan to change treatments. He still didn’t feel a need for me to come there for treatment. And then he said the only optimistic thing I had heard from a physician – sometimes the tumors just go away, maybe that will happen. It’s crazy to think that’s as good as it gets, but I was happy to hear that.
That brings me to our third stop – Johns Hopkins. Hopkins is the third ranked cancer center in the country, and they have a physician who only sees patients with esophageal and gastric cancer. I did not have high hopes going in to this one, given our previous experiences, but it turned out to be a good trip. He started by telling us what every other doctor has already told us – it is unethical to stop a treatment that is working. As long as I am not seeing disease progression on my current treatment, I should continue with that for as long as possible. But, he also told us about some of the research they are doing that may be an option down the road. The study that he would recommend would be for two drugs that they are calling “chemo primers.” The drugs are not chemotherapy agents themselves, but the intention is that they would be given to cancer patients to improve tumor response to subsequent chemotherapy. This isn’t an option for me now, but it might be a good route if FOLFOX stops working for me. I guess we will have to wait and see.
So we have been to two of the top three cancer centers in the country, and we have seen four different physicians (including the physician I see at Virginia Cancer Specialists). I think we have heard all we are likely to hear for the time being. It is frustrating that there aren’t more options and that so little is known about stomach cancer treatments, but we will likely be back at Johns Hopkins and Georgetown in the future to figure out what will be next. In the meantime, I am hoping that the clinical trials that are going on across the country find something promising.
Thursday, January 24, 2013
Wednesday, January 16, 2013
Looking Back
A lot of people have asked me how I found out I have cancer. I wrote a bit about that here. But looking back, I realized that I had symptoms long before I went to the hospital.
I remember thinking that something wasn't quite right starting in April 2012 (about 2 months before I ended up at the hospital), but I had chalked the symptoms up to stress. I started being unable to complete my usual workouts. After running a 10-mile race on April 1st, by April 21st, I couldn't make it 3 miles without stopping to walk. I was playing on a softball team at the time and would get really winded running the bases or making a play in the field. Eventually I started to get out of breath walking up a flight of stairs. Then I started feeling like I wanted to sit down all the time. I would even sit down while brushing my teeth.
I started feeling queasy from time to time, but I didn't think much of it. I was eating more, working out less, and not gaining any weight. My bowel movements changed. In late May, I developed severe pain in my right shoulder - I tried stretching, massage therapy, and eventually muscle relaxants did the trick.
All of these things together seem to indicate that something wasn't right. I never even thought that something serious might be wrong. I was stressed at work. I thought I was getting out of shape. It never occurred to me to see a doctor.
Sometimes I can't help thinking that if I had gone to the doctor earlier, maybe they would have caught it at stage II or III instead of stage IV. Or maybe the chemo would have worked better earlier on. And then I remember stories about people with stomach cancer who go to doctors for months and are told they have acid reflux or some other benign condition and are sent home. In some of those cases, when they finally find out it is gastric cancer, it is too late and treatment doesn't work. My doctors think the cancer could have been growing for a year or even two years before we found it. It is crazy to think that something like that can be happening inside your body for so long before you realize it.
So, who actually goes to a doctor and tells them they get tired walking up a flight of stairs? So I don't beat myself up about it. I didn't put the pieces together at the time, even though they seem obvious in hindsight. Will I tell people to pay closer attention to changes in their health? To see a doctor even if something seems minor? I definitely will.
I remember thinking that something wasn't quite right starting in April 2012 (about 2 months before I ended up at the hospital), but I had chalked the symptoms up to stress. I started being unable to complete my usual workouts. After running a 10-mile race on April 1st, by April 21st, I couldn't make it 3 miles without stopping to walk. I was playing on a softball team at the time and would get really winded running the bases or making a play in the field. Eventually I started to get out of breath walking up a flight of stairs. Then I started feeling like I wanted to sit down all the time. I would even sit down while brushing my teeth.
I started feeling queasy from time to time, but I didn't think much of it. I was eating more, working out less, and not gaining any weight. My bowel movements changed. In late May, I developed severe pain in my right shoulder - I tried stretching, massage therapy, and eventually muscle relaxants did the trick.
All of these things together seem to indicate that something wasn't right. I never even thought that something serious might be wrong. I was stressed at work. I thought I was getting out of shape. It never occurred to me to see a doctor.
Sometimes I can't help thinking that if I had gone to the doctor earlier, maybe they would have caught it at stage II or III instead of stage IV. Or maybe the chemo would have worked better earlier on. And then I remember stories about people with stomach cancer who go to doctors for months and are told they have acid reflux or some other benign condition and are sent home. In some of those cases, when they finally find out it is gastric cancer, it is too late and treatment doesn't work. My doctors think the cancer could have been growing for a year or even two years before we found it. It is crazy to think that something like that can be happening inside your body for so long before you realize it.
So, who actually goes to a doctor and tells them they get tired walking up a flight of stairs? So I don't beat myself up about it. I didn't put the pieces together at the time, even though they seem obvious in hindsight. Will I tell people to pay closer attention to changes in their health? To see a doctor even if something seems minor? I definitely will.
For Charity
A friend is running a marathon this spring and is raising money for the American Cancer Society. He asked if Adam and I would be willing to share our story on Facebook as part of his fundraising efforts. We were happy to do so. After reading some of the other stories he had already shared from others, this is what I decided to share:
I know many of you have already seen this, but I wanted to have it documented as part of our journey.
I went to the Emergency Room at Virginia Hospital Center on Sunday, June 24, 2012. That was the day I found out I had cancer. It took almost two weeks for me to receive a diagnosis: stage IV stomach cancer. What does that diagnosis mean? It means that currently there is no cure. Chemotherapy is given to shrink tumors, alleviate symptoms, improve quality of life, and prolong survival for as long as possible. The statistics say that I had a less than 15% chance of living 6 months after diagnosis and less than 4% of making it to 5 years. I've seen three doctors at different cancer centers and only one mentioned the possibility of the tumors ever going away.
The diagnosis was devastating. It still is. In a day you start to realize that your plans for life, your dreams for the future, have a slim chance of coming true. Will I ever have kids and get to raise a family? Will I get to grow old with my husband? How will all of this impact my friends and family? I am lucky to be responding well to treatment. I am able to spend time with family and friends and feel almost normal at times. And I am hopeful I will beat the odds and defeat caner in 2013.
I am thankful for all those of have dedicated their careers to cancer research, to the patients who have participated in clinical trials, and to all of those who have helped fund cancer research to improve available treatments and to find cures. I am hopeful I will be here when they find a cure for stomach cancer.
I know many of you have already seen this, but I wanted to have it documented as part of our journey.
Saturday, January 12, 2013
Tumor Markers
On Wednesday I received a call from one of the nurses about my most recent tumor markers. They are up. Way up. This isn't good news, but it isn't all bad news either. Let me explain.
Every few weeks before starting a new round of chemo, I have blood drawn to check my CBC to make sure my blood levels are high enough to start treatment. They also test my liver function and tumor markers, among other things. There are two tumor markers that they check: CEA and CA19-9.
When I was first diagnosed on 6/24, my CEA was 232 and my CA19-9 was 11,058. By the end of July, my CA19-9 was up to 14,945. It could have been even higher between 6/24 and when I started chemo on 7/11. Tumor markers can also increase in response to chemotherapy. When tumor cells are responding to chemo, they can release CA19-9 into the bloodstream causing a temporary rise in CA19-9 levels.
By mid-September, my CEA had decreased to 8.7 and my CA19-9 was down to 253.
When the nurse called me on Wednesday, she told me that my CEA is up to 72 and my CA19-9 is up to 9,371. She was really nice and told me not to panic before she told me the numbers. She said that my doctor wanted her to tell me that this can be expected after taking a break in treatment. I took a short break in treatment in November and then had to delay treatment in December because of low blood counts. This likely allowed the tumors to grow back a bit. My doctor expects the numbers to be down next time now that I am back on track with regular treatments. I am hoping the increase is partly due to the tumors responding to the new chemo regimen I started in December.
I was upset when she told me the news, but I'm trying not to let it get to me. They will draw blood for labs again this Tuesday, so I should have the results in a week or so. Fingers crossed the numbers are down!
Every few weeks before starting a new round of chemo, I have blood drawn to check my CBC to make sure my blood levels are high enough to start treatment. They also test my liver function and tumor markers, among other things. There are two tumor markers that they check: CEA and CA19-9.
- CEA (carcinoembryonic antigen) is a protein found in elevated levels in those with solid tumor cancers, including gastric cancer. The normal range of CEA is less than 2.5ng/mL.
- CA19-9 (carbohydrate antigen or cancer antigen) is an antigen commonly found in elevated levels in pancreatic cancer and gastric cancers. The normal range of CA19-9 is less than 35U/mL.
When I was first diagnosed on 6/24, my CEA was 232 and my CA19-9 was 11,058. By the end of July, my CA19-9 was up to 14,945. It could have been even higher between 6/24 and when I started chemo on 7/11. Tumor markers can also increase in response to chemotherapy. When tumor cells are responding to chemo, they can release CA19-9 into the bloodstream causing a temporary rise in CA19-9 levels.
By mid-September, my CEA had decreased to 8.7 and my CA19-9 was down to 253.
When the nurse called me on Wednesday, she told me that my CEA is up to 72 and my CA19-9 is up to 9,371. She was really nice and told me not to panic before she told me the numbers. She said that my doctor wanted her to tell me that this can be expected after taking a break in treatment. I took a short break in treatment in November and then had to delay treatment in December because of low blood counts. This likely allowed the tumors to grow back a bit. My doctor expects the numbers to be down next time now that I am back on track with regular treatments. I am hoping the increase is partly due to the tumors responding to the new chemo regimen I started in December.
I was upset when she told me the news, but I'm trying not to let it get to me. They will draw blood for labs again this Tuesday, so I should have the results in a week or so. Fingers crossed the numbers are down!
Wednesday, January 9, 2013
Depression
I was at one of my usual appointments with one of the nurse practitioners when she asked me if I was depressed. Me? Depressed? No way! I immediately told her I was fine. I was surprised by the question. Honestly, I had never really thought about whether or not I was depressed. So I started thinking about it.
I don't think I have chronic depression, but I've realized that I definitely have days where I am more depressed than others. There are times when I don't feel like responding to emails or text messages from friends and family, even though I have the time. There are times when I don't want to talk on the phone with people, to hang out with friends, to do anything at all. Sometimes I just want to be alone.
There are times when I have a really hard time with motivation. I will want or need to do something, but I just sit there. And sit there. When it's one of those days, it can take me a long time to start moving. I will sit, doing nothing, for a long time before I will myself to get up and do something. OK, maybe I am depressed.
I consider myself a generally happy person. I definitely would have said that before cancer, and I still think that I am. At least more recently. Realizing that maybe I am depressed from time to time is good - maybe that will help me get myself out of that mindset.
Early on after my diagnosis, I would think a lot about the sad things in coping with something like this. I would think about dying, about not having all of the experiences I wanted in life, about the future Adam and I were supposed to have, about how unfair this all is, about how much I hate that Adam has to go through this with me, about me leaving him behind, about my family. I cried a lot.
At the end of a day that was particularly rough for me emotionally, Adam told me he didn't want this to ruin my spirit. I took that to heart. I have a choice to be happy, to enjoy life, and to do what I can to beat this.
I know that positive thinking is important. I try to divert negative thoughts by telling myself that I am strong, I am a fighter, and I will beat this. I try to focus energy on fighting the tumors. The Pac-Man visual hasn't worked for me. Instead, I envision a tiny version of me inside my liver punching, kicking, and destroying the giant cancer cells.
Even though I know the power of positive thinking/energy or whatever you want to call it, there are still times when the negative thoughts creep in my head and make me sad. I am hoping I get better and better at focusing on the positive.
I don't think I have chronic depression, but I've realized that I definitely have days where I am more depressed than others. There are times when I don't feel like responding to emails or text messages from friends and family, even though I have the time. There are times when I don't want to talk on the phone with people, to hang out with friends, to do anything at all. Sometimes I just want to be alone.
There are times when I have a really hard time with motivation. I will want or need to do something, but I just sit there. And sit there. When it's one of those days, it can take me a long time to start moving. I will sit, doing nothing, for a long time before I will myself to get up and do something. OK, maybe I am depressed.
I consider myself a generally happy person. I definitely would have said that before cancer, and I still think that I am. At least more recently. Realizing that maybe I am depressed from time to time is good - maybe that will help me get myself out of that mindset.
Early on after my diagnosis, I would think a lot about the sad things in coping with something like this. I would think about dying, about not having all of the experiences I wanted in life, about the future Adam and I were supposed to have, about how unfair this all is, about how much I hate that Adam has to go through this with me, about me leaving him behind, about my family. I cried a lot.
At the end of a day that was particularly rough for me emotionally, Adam told me he didn't want this to ruin my spirit. I took that to heart. I have a choice to be happy, to enjoy life, and to do what I can to beat this.
I know that positive thinking is important. I try to divert negative thoughts by telling myself that I am strong, I am a fighter, and I will beat this. I try to focus energy on fighting the tumors. The Pac-Man visual hasn't worked for me. Instead, I envision a tiny version of me inside my liver punching, kicking, and destroying the giant cancer cells.
Even though I know the power of positive thinking/energy or whatever you want to call it, there are still times when the negative thoughts creep in my head and make me sad. I am hoping I get better and better at focusing on the positive.
Tuesday, January 8, 2013
Back to Work
After 6 months and 15 days, I went back to work part-time yesterday. I had a lot of mixed feelings about going back to work. I was excited to see my coworkers, and I was looking forward to feeling somewhat normal again. But I was also apprehensive. I was nervous I wouldn't be as good at my job as I used to be, that there wouldn't be a place for me anymore, or that I wouldn't remember how to do things.
I know my coworkers care about me. While I was out, I received regular care packages from my office with thoughtful gifts and countless cards and notes. I received regular emails and text messages from people across our business unit. It was good to know they hadn't forgotten about me and were rooting for me to get well. Even former coworkers sent me notes and gifts. I was humbled by their generosity and thoughtfulness.
So, when I arrived on Monday morning, many from my department met me at my door to greet me. And I found my office looking like this:
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This was somewhat of a nice gesture, but also a prank - my colleagues have a history of pranking people when they are out of the office on vacation (think saran-wrapped office supplies, missing monitors, forts made out of cardboard assembled over cubes). All things considered, they were nice to me and let me off the hook fairly easily. Plus, our department head made sure the team cleaned up for me :).
It was nice to be back! I didn't get a lot done because everyone kept coming by to welcome me back. At the end of the first day, I was happy that I was back. I really do work with a great group of people.
I went to lunch on Monday with some of my coworkers from my previous department who have continued to treat me like part of their team. During my absence, I learned that they created a network folder called "Project Megan." They sent me cute videos they made and an iPad! I was floored by their generosity.
Today I went to work with two former coworkers who have moved on to other opportunities. During lunch, one of them told me how she learned that I had cancer. One of my other coworkers called her in tears and told her she wouldn't tell her what was wrong until she stopped driving and pulled over. They both cried on the phone together thinking about me. It was a touching story (and it made me cry to hear it). I'm so thankful to know they cared so much.
With such great support from my boss, general manager, and all of my coworkers, how could I not be happy to be back? I know that they will all be there to support me. I am planning to work about 5 or 6 hours a day for a while (except for chemo days), so I am hopeful I can get back into the swing of things quickly and start making some meaningful contributions.
I know my coworkers care about me. While I was out, I received regular care packages from my office with thoughtful gifts and countless cards and notes. I received regular emails and text messages from people across our business unit. It was good to know they hadn't forgotten about me and were rooting for me to get well. Even former coworkers sent me notes and gifts. I was humbled by their generosity and thoughtfulness.
So, when I arrived on Monday morning, many from my department met me at my door to greet me. And I found my office looking like this:
.JPG)
It was nice to be back! I didn't get a lot done because everyone kept coming by to welcome me back. At the end of the first day, I was happy that I was back. I really do work with a great group of people.
I went to lunch on Monday with some of my coworkers from my previous department who have continued to treat me like part of their team. During my absence, I learned that they created a network folder called "Project Megan." They sent me cute videos they made and an iPad! I was floored by their generosity.
Today I went to work with two former coworkers who have moved on to other opportunities. During lunch, one of them told me how she learned that I had cancer. One of my other coworkers called her in tears and told her she wouldn't tell her what was wrong until she stopped driving and pulled over. They both cried on the phone together thinking about me. It was a touching story (and it made me cry to hear it). I'm so thankful to know they cared so much.
With such great support from my boss, general manager, and all of my coworkers, how could I not be happy to be back? I know that they will all be there to support me. I am planning to work about 5 or 6 hours a day for a while (except for chemo days), so I am hopeful I can get back into the swing of things quickly and start making some meaningful contributions.
Wednesday, January 2, 2013
Chemo: Round 9
Today I am receiving my ninth round of chemotherapy. People often ask me how many rounds I will have to do, when I will be done with chemo, etc., but those are questions I can't really answer because we just don't know. We don't know because, at least for now, there is no cure for stomach cancer. About one week after I started chemo, I met with the on-call physician at Virginia Cancer Specialists. In a rather curt manner, she told me I would be on chemotherapy until I died. This wasn't really something I had talked about with my regular physician, so to hear her say that so bluntly was a little shocking. I'm still hopeful all of this is going to work, that I'm going to be cured.
I started my first round of chemo on July 11, 2012 with the EOX protocol. EOX is a combination of epirubicin, Oxaliplatin, and Xeloda given at three-week intervals. Oxaliplatin is given intravenously over a two-hour period, then epirubicin is given via an IV push over about 5 minutes per syringe, and Xeloda is an oral drug taken twice daily for two weeks following chemo.
After six rounds of EOX, we switched my chemo to FOLFOX, a combination of Oxaliplatin, leucovorin, and 5-FU. 5-FU and Xeloda are essentially the same drug, except 5-FU is given intravenously over a 48-hour period instead of taking pills for two weeks.
I started my first round of FOLFOX at the end of November and am currently receiving my third round as I type. This regimen is given every two weeks instead of three, and instead of taking Xeloda pills at home for two weeks, I wear a pump containing 92mL of 5-FU that infuses over 48 hours. Then I go back to the infusion center when it runs out and they disconnect the pump. It is a pain to carry the pump around for two days, but so far it is worth it because I can get the full dose in a shorter about of time and the FOLFOX regimen has considerably fewer side effects than EOX. My hair has started to grow back. I don't feel as nauseaus. And I can manage low blood counts without stopping treatment. Let's hope this one works.
I started my first round of chemo on July 11, 2012 with the EOX protocol. EOX is a combination of epirubicin, Oxaliplatin, and Xeloda given at three-week intervals. Oxaliplatin is given intravenously over a two-hour period, then epirubicin is given via an IV push over about 5 minutes per syringe, and Xeloda is an oral drug taken twice daily for two weeks following chemo.
After six rounds of EOX, we switched my chemo to FOLFOX, a combination of Oxaliplatin, leucovorin, and 5-FU. 5-FU and Xeloda are essentially the same drug, except 5-FU is given intravenously over a 48-hour period instead of taking pills for two weeks.
I started my first round of FOLFOX at the end of November and am currently receiving my third round as I type. This regimen is given every two weeks instead of three, and instead of taking Xeloda pills at home for two weeks, I wear a pump containing 92mL of 5-FU that infuses over 48 hours. Then I go back to the infusion center when it runs out and they disconnect the pump. It is a pain to carry the pump around for two days, but so far it is worth it because I can get the full dose in a shorter about of time and the FOLFOX regimen has considerably fewer side effects than EOX. My hair has started to grow back. I don't feel as nauseaus. And I can manage low blood counts without stopping treatment. Let's hope this one works.
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